I'm almost 13 years into surviving colorectal cancer. Thirteen years of potty talk. Colonoscopies. Running to the restroom. Jokes about farts. Random calls about things people saw in their toilet.
You name it, I've tackled it, faced it or lived through it. And if I haven't -- I guarantee one of my friends from The Colon Club has -- we like to stick together.
After meeting fellow survivors and receiving many questions lately, I thought I'd compile a list of some of the understated facts about living with colorectal cancer. Some tips that you'll probably not find in a pretty Patient Support Brochure.
For fellow colorectal cancer survivors, here's my real, raw advice. Take it or leave it -- but here are a few things I've learned over the years:
Go Ahead and Get Used to Pooping a Lot.
Many of us have shortened intestines, therefore, shorter storage capacity. Your "normal" will probably never be "normal" again. Don't compare yourself to your friends. There is no magic number. The key isn't getting yourself to go more or less each day, but finding a rhythm that works for you, your body and your water bill.
Don't Hate Those Who Can Eat Salad.
Some survivors can feast on salads and drink you under the table, only to face little-to-no consequences the next day. Others will be bedridden and face gastrointestinal havoc for the next week if a piece of lettuce makes its way onto a sandwich. Even within the survivor community, tolerance to food, exercise and stress varies by the person. So just expect it and don't become bitter when you're stuck with ramen noodles while someone else gets to eat the veggie delight or enjoy wine with dinner. At least you have your life.
Rectal Cancer Ladies -- It's Okay If You Can't Wear Thongs.
For some gals who've had colon surgery and especially radiation, the last thing you want is sexy underwear. Give yourself permission to be off the hook and take it easy. If you want to go sexy -- go sexy. If you don't, or you can't handle it, then don't. And know if you face this dilemma, you're not the only one. Panties are not always a priority when it comes to surviving colorectal cancer.
Budget for the Double Ply.
You'll find that as a colorectal cancer survivor, you'll become an expert on all things toilet, bathroom and potty. So, when it comes to your home, people will look to your restroom as the "standard." And that means decent toilet paper and bathroom spray (or matches will work, too). Reading material is optional.
Fissures Are Not Your Friends.
Once you're past the initial colorectal cancer surgery and treatment, be prepared for lingering issues to arise. It's common to develop hemorrhoids or fissures. Depending on what section and how much of your colon was removed, you might fart a lot. I mean a lot. If you had radiation, you might have some pain. Or cramping. Or soreness in your belly on a random day. Post-chemo neuropathy struggles impact many out there. Your body has been through the ringer, so know that as time goes on, side effects may appear or linger. That's normal. Sucky, but normal.
You're Not the Only One Who's Considered a Zipper Tattoo
Many of us have long, vertical scars that run the length of our abdomens. Scars that seem perfect for some type of zipper tattoo. Just know that if you're thinking about it, you'll join a fleet of others who've thought about -- and some have actually done it. If that's you, please send me a picture.
Be Careful With the Cancer Card.
There are times when you need to use it. And that's okay. Using the excuse of "I had cancer" to exempt you from certain things or secure your way into others is sometimes expected. And necessary. But, other times -- it's not. Be intentional about knowing the difference of when it's okay to use the cancer card, and when it's not okay. And if you're unsure, ask a close friend to help you. Preferably someone who's honest.
Not Everyone Thinks Poop Is Funny.
I tend to laugh at underwear and poop jokes that most fourth grade boys tell. However, that's me, and it's how I've managed to cope with my life. I've learned however that not everyone is in this boat. Some survivors are still embarrassed or don't want to publicly talk about restroom activities -- colon cancer or not. And that's okay. Just because you had colon cancer doesn't mean you'll automatically feel comfortable joking about poop and farts. If you do, that's awesome and joke away. Just don't get offended if not everyone laughs.
Find Your Own Way to Cope.
We can put a lot of pressure on ourselves once we face a big disease like cancer. But it's important to make your journey your own. Some will fight cancer and write about it. Others will fundraise, increase awareness and become an advocate. Yet others will not -- they'll want to return to life as though it never happened. Each person takes away something different from this battle. The important thing is figuring out what you need to heal.
The More You Open Up -- The More You'll Inspire.
Last, even if you're a quiet person, I encourage you to share your story in some way. When I began opening up and sharing about what happened to me, I found the greater purpose in it. Talking and writing about my experiences has given others hope, and sometimes some comic relief, while also giving me peace and satisfaction. Knowing I've made a difference goes a long way.
Whether you're an introvert or extrovert, or somewhere in between, find a way to share what's happened to you. Your strength will inspire. And you'll find healing when you see that your story helps others.
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